Experiences of Caregivers in a Home-Based Palliative Care Model – A Qualitative Study

INTRODUCTION

Studies show that patients with advanced cancer prefer to be cared for and die at home instead of at an institution.[1234] A study conducted by the Cipla Palliative Care Institute, Pune, India, in 2014 showed that 83% of people in India expressed a preference to die at home.[5]

With the single-minded purpose of delivering a home-based, multidisciplinary, efficient and compassionate, palliative care service to patients in the city of Mumbai, the Jimmy S Bilimoria Foundation was founded in January 2015 and launched its PALCARE service in December 2015. PALCARE became the first NGO to offer a multidisciplinary home-based palliative care service for cancer patients from any facility or even privately within Greater Mumbai. Since inception till the date of this report, PALCARE has looked after over 1000 advance-stage patients and provides services to 100–120 patients concurrently. Right from inception, the PALCARE medical team has witnessed how essential it is for any palliative care service to be supported by at least one caregiver, be it a family member or other individual like a nursing aide or friend, who diligently takes on the charge of looking after the patient after the palliative care team visits and does so in a responsible, compassionate, and efficient manner and is willing to be an adjunct to a multidisciplinary palliative care medical team.

A systematic review of the literature published between 2006 and 2014 that analyzed the various roles and tasks of family caregivers of patients in palliative care revealed that family caregivers are the “greatest support of patients in end-of-life care, especially when they wish to be cared for at home” and that they can be considered the “core structure for the continuity of care of these patients.”[6] However, caregivers face a demanding and challenging role. The emotional and physical burdens that caregivers face in palliative care are a well-documented phenomenon.[78] Fatigue, stress, and burnout are also the issues that confront the persons tasked with caring for an ailing relative or friend.[9] Caregivers report higher rates of depression, lower overall life satisfaction, and poorer physical health than age- or gender-based population norms and noncaregiving control groups.[1011] A direct relationship between burnout and depression among caregivers has also been reported.[8]

As the caregiver is such a critical aspect of delivering a top-quality service, it becomes important to gain a fuller understanding of the caregiver's role. This study, conducted in conjunction with the Tata Institute of Social Sciences (TISS), sought to identify and comprehend the challenges that caregivers face in a home-based palliative care setting and the mechanisms that facilitate coping by caregivers during the active caregiving phase, understand the caregivers' perceptions about the factors that would help them in caring for their patient as well as for themselves, and design interventions for future caregivers and recipients of PALCARE's service, based on their suggestions.

METHODS

This research study employed a qualitative approach to understand the experiences of individuals who had performed the role of primary caregiver to a now-deceased patient and had received support from PALCARE's home-based palliative care service in the city of Mumbai. For study purposes, a primary caregiver was defined as a person who, from among all the patient's relatives/carers, had spent the most time with the patient on a daily basis, had been responsible for taking care of a majority of the patient's physical and emotional needs, and had ensured that instructions provided by the home-based palliative care team were adhered to. A home-based palliative care service delivers care at home and offers multidisciplinary care with an integrated team that include physicians, nurses, social workers, and counselors who visit patients in their homes and offer tailored treatment plans focused on managing symptoms and improving the quality of life, so that the patient may live in dignity. Ethical clearance for this study was obtained from the TISSs Institutional Review Board.

Focus group discussion (FGD) was the primary method of data collection, which was used to explore the meaning held by several individuals on their caregiving experiences and the support received and support required. The FGD involves a “gathering of a group of people who are asked about their attitudes toward a concept, product, or idea.” Regarding the process, a “set of open-ended questions” initiates the discussion, and the facilitator can, thereafter, “steer the participants back to the focus group questions or go along with the direction of the discussions, depending on the research questions posed.”[12]

FGDs were supplemented by in-depth interviews (IDIs) with select caregivers who either made points that needed further investigation or had been a second-degree relative to the patient (e.g. grandparent, grandchild, aunt/uncle, cousin, in-law, or any other distant relation). In-depth interviewing is a qualitative research technique that “involves conducting intensive individual interviews with a small number of respondents,”[13] with the aim being to gather a more detailed and rich understanding of the topic of interest.[14] Through this method, “the participant's experience, behavior, feelings, and/or attitudes may be probed deeply” allowing the participant “to communicate much more freely and to provide more detailed descriptions.”[14]

Potential participants were identified by TISS from PALCARE's database of patients and their caregivers and had to meet all of the following inclusion criteria: (i) at least 18 years of age, (ii) able to provide written informed consent, (iii) able to communicate in English, Marathi, or Hindi, and (iv) had performed the role of caregiver for at least 7 days with PALCARE. A PALCARE staff member then contacted the identified potential participant over the phone, briefed them about the study in a language they could understand and assessed their interest in participation. If they provided verbal consent, they were then invited to the PALCARE office for the FGD or met up with at a venue of their choice for the IDI. The TISS team obtained written informed consent from the participants before conducting the FGD or IDI.

Participants belonged to one of three socioeconomic groups: lower, middle, or upper and hailed from three geographical areas: South-Central Mumbai (Colaba to Mahim and Parel, Dadar to Wadala, Sion and Chembur), Western Suburbs (Bandra to Borivali), and Eastern Suburbs (Kurla to Thane, Dombivali, Kalyan). Three FGDs were held at the PALCARE office between September and November 2018, with a PhD scholar from TISS facilitating each. An FGD guide outlining questions for discussion was prepared in English, translated to Hindi and Marathi and then back-translated to English. FGDs were conducted in any of these three languages, based on the choice of the group. One FGD was held for each of the three socioeconomic groups, with six (upper), five (middle), and twelve (lower) participants, respectively. Over the same period, four IDIs were conducted with caregivers by the PhD scholars from TISS, across income groups: one (upper), two (middle), and one (lower) [Table 1].

All FGDs and IDIs were audio-recorded using a SONY audio-recording device (model ICD-UX560F) and transcribed. Data were extracted from the raw transcripts and tabulated into the following main categories: (i) a description of the (deceased) patient they cared for and the last days leading up to his/her death, (ii) choice of home-care service – advantages and disadvantages, (iii) role of home-care service – support received and required, (iv) self-assessment of efficacy in caregiving, (v) respite and coping mechanisms, (vi) bereavement, (vii) impact on the caregiver's life, and (viii) recommendations for future caregivers and PALCARE's service. The research teams from TISS and PALCARE analyzed the data independently. Major themes that arose from the data were identified and then discussed jointly in detail. Some caregivers had made similar statements or expressed the same concerns, and emerging patterns were looked at by the research team.

RESULTS

Inferences were drawn from 3 FGDs and 4 IDIs. At the time of the FGD/IDI, caregivers were bereaved anywhere between 4 and 32 months. Data gathered during the four IDIs either reinforced or supplemented the data gathered during the three FGDs, helping the research team gain a better understanding of what caregivers' needs are. IDIs allowed caregivers to express themselves more freely and in more detail about their experiences.

DISCUSSIONS AND CONCLUSIONS

Based on the responses received, it is evident that a well-designed caregiver program should be made part of any home-based palliative care service. The following few domains would need to be addressed in such a program:

1. Awareness and comprehension: Often, caregivers and patients are unexpectedly informed by their treating physicians to discontinue curative treatments, and those physicians who are aware of the benefits of palliation may, thereafter, refer the patient to palliative care service for “further care.” In such cases, either at the point of entry into the service, but normally a few visits later, after the palliative team has built a rapport with the patient and family, breaking bad news about the terminal nature of the illness becomes the responsibility of the palliative care team. Explaining the illness and its prognosis, as also the futility of further curative treatments and the scope of palliative care, needs to be conducted sensitively, in lay language, to patients and caregivers. Caregivers must be provided all relevant information by the palliative care team, so that they may make informed choices and be able to competently assist the team in ensuring that the patient is physically and emotionally cared for and can die in dignity

2. Collusion: Often, caregivers wish to shield their patients from hearing bad news about the terminal nature of their illness and imminent death and collude with health-care professionals to hide these truths. However, this takes away the patient's right to autonomy. Caregivers need to be prepared by the palliative care team to allow the patient to state his/her treatment preferences, perform any last wishes, reconcile with persons if needed, and prepare their legal/financial arrangements, particularly before he/she becomes incapacitated. Moreover, patients who are aware of their prognosis are often able to reach a state of acceptance, and therefore comfort, quicker

3. Training in skills: For caregivers who opt to care for their patients at home, it is important that they are well informed of the nature of the condition, possible side effects that may occur, and how to handle these. Training on essential skills such as wound care, administering subcutaneous injections, changing urine bags, and cleaning stoma bags is desirable. As the caregiver is likely to be preoccupied providing active care to the patient, these skills need to be demonstrated at home as often as possible, and ideally by the caregiver carrying out the procedure under observation of the palliative care team. Creating a series of procedural steps with pictures may be explored that can be provided as handouts

4. Preparation for the patient's death: Caregivers are most anxious about what to expect while the patient is at end-of-life (as they may not have witnessed any home deaths before) and are fearful that the patient may suffer extreme pain or distress while dying, which can cause them to panic and rush the patient to a hospital/intensive care unit. Providing adequate information about what to expect during the dying process and simple procedures that they can perform at home to keep the patient as comfortable as possible will help assuage these fears. Leaving behind a box with the medicines that may be required at the end stage, and corresponding instructions for usage may help provide a sense of confidence to the family. A brief guidebook may come in handy at moments of panic. Information about the procedure for obtaining a death certificate must be given in advance, and contacts of funeral services may be provided

5. Self-care: Caregivers are likely to ignore their own physical, mental, emotional, and social trauma while they are engrossed in caring for a loved one. The palliative care team must emphasize the need for caregivers to take adequate time out to destress, without feeling guilty, explaining that this is essential for them to be more attentive at crucial times and hence be able to provide better patient care

6. Bereavement: One or more bereavement visits should be made to the home of the caregiver, by the counselor/team, within a reasonable time after the death of the patient, depending on the family's convenience. This can be supplemented by regular group bereavement meetings where caregivers can come together to share their experiences and memories. This platform can be used to ascertain potential volunteers for home visits, advocacy and testimonials, fundraising, data-entry/back-office, and other activities.

Besides the caregiver program, the following are further suggestions from the study participants that PALCARE may consider to improve its services: form a panel of general physicians to provide death certificates to patients residing within a given radius and keeping these doctors informed about the patients directly, rather than via the patient's relatives; making more frequent visits/phone-calls to homes of those imminently dying; initiating or providing links to services for dependents (elderly or children) who may require legal, financial or social services after the demise of the patient, keeping contact lists of trained nurses/attendants bureaus and funeral services handy, and liaising with treating oncologists and hospitals for earlier referrals.

A follow-up study to understand caregivers' experiences may be carried out after a caregiver program is initiated, particularly to study its impact on addressing collusion, self-care practices, and confidence in patient care.